Diabetes Self-Management Blog

Dad had surgery last Friday to have a stent placed to keep the excess fluid in his brain at a normal level. He has a condition called normal pressure hydrocephalus, which is when the cerebrospinal fluid that keeps the brain nourished and cushioned doesn’t drain fast enough. That causes pressure to build up and affect the areas of the brain that control urinary continence, the ability to walk properly, and memory.

He’s doing well, and we talked Sunday. Before the surgery, he was in the equivalent of the third stage of Alzheimer. A couple of days after surgery, he knew my name, that I was his daughter, and that I had sent him balloons. But I had to keep myself from laughing when he asked, “When are you going to come over to (pause) wherever I am.” Which was in his bedroom at home.

Bless his heart, as they say in the South. And the story was apropos of nothing, except that it gave me a chuckle and I hope it gave you one, too — and because I believe people should know about normal pressure hydrocephalus. Because it usually occurs in older individuals, most think “it’s nursing home time” when people begin to wet themselves, stumble around, and fall and become forgetful, when, in fact, it’s a treatable condition. If one of your loved ones begins displaying those symptoms, you might want to ask about having that person tested for the condition.

OK. On to something else.

While working on a project, I discovered I’d forgotten to include a link to a medical journal article in an e-mail I’d copied into a document and saved in a folder. So I went looking through my old e-mails to see if I’d saved the original. (I had. Whew!)

In the same general vicinity was a comment I’d saved from a blog entry called “Type 1s vs. Type 2s?” written by David Spero.

Here’s most of the comment:

Yes, I’ll admit to being one of those who gets a bit peeved when people don’t understand the difference between a type 1 and a type [II]. I have pretty much gotten used to the ignorance of many doctors and try to ignore the uneducated general public. But my experience has shown me that much of the irritation type 1’s have with type II’s is a result of the attitude of so many type II’s. First of all, as a group they obviously do not have a good understanding of their own disease, let alone what type I is. (just read some of the comments above)

I have heard many T II’s say “I really don’t even know I have the disease”, and find many do not even know what their AIc levels are.

How many times have I witnessed type II’s gobble down large amounts of potatoes and dessert at a meal? Often!

I have no animosity toward the type II’s as a group…but admittedly resent being lumped together with them. I do believe that about 50% of them could be diabetes free with a lifestyle and diet change and that about that same % often give all diabetics a bad name. I believe one of the regular writers for the Diabetes Self Management blog is sometimes guilty of this.

See that last sentence? Gee, I wonder who he was talking about.

(By the way, one of my pet peeves is the use of “Type II” more than a decade after it was changed to Type 2 so it wouldn’t be mistaken for “Type eleven.”)

I think that people with Type 2 diabetes fall into three basic categories: those who either don’t take care of themselves at all or try it for a while and then give up; those who are obsessive about managing their Type 2 diabetes; and those who educate themselves enough to be able — for the most part — to maintain the lifestyle they prefer.

I am, or have been, in all three categories.

Have all of you out there had diabetes self-management education? I didn’t until nine years after diagnosis. Well, I guess I had some. It consisted of my doctor handing me a piece of paper with the American Diabetes Association’s (ADA) exchange diet on it and telling me: “Here. Follow this. Don’t eat any sugar.” And to come back in three months for an HbA1c test “so I can tell if you’ve eaten any pizza. Har har.”

I followed it for about two weeks. It didn’t fit the way I ate, and it didn’t include many of the foods I eat. “Matzo? Falafel? Kugel? What are those?” that piece of paper seemed to say. I was miserable. So I gave up. After all, all I knew about diabetes was that you had to follow that diet, you couldn’t eat sugar, and you had to take insulin. I didn’t have to take insulin, so my diabetes must not have been the “bad” kind.

A friend’s son went to his doctor five or so years ago and his education was: “you have diabetes. Watch what you eat.”

My husband’s (former) doctor told him: “Gee. Your fasting level is 160. We’ll have to keep an eye on that.” That was something like three years ago. So it’s still going on.

How many people get diagnosed with Type 2 diabetes and aren’t told anything or sent for education?

Nine years after diagnosis, I went to an educator for the first time. It was shortly after I learned there were such things as CDEs. Nine years it took me. As it turns out, I learned later, the doctor who diagnosed me didn’t believe in preventive care. And he later became medical director of the clinic — the largest group of doctors in town.

At any rate, I learned about diabetes and became obsessive about taking care of my Type 2 diabetes. I ate precisely the amount of carbohydrates I was allowed at precise times every day. The first time I “allowed” myself to eat something I’d been wanting for a long time, I dissolved into tears when my husband said, “Jan, your diab…” We were at a restaurant. I’d already taken my insulin. (This was pre-rapid-acting insulin). Appetite now gone, I had to eat anyway.

During this period, I lectured other people. That’s the way it was supposed to be done and that’s the way they should be doing it. I was a pain in the patootie! I was also stressed and depressed. I’m more of a loosey-goosey free spirit.

Today, when I run into people in the obsessive category, I wonder if that’s their personality type or if they’re like I was for a while and are miserable while they’re trying to do “the right thing.”

Next week, I’ll address the final category. And probably add some other related stuff. This blog entry is now approaching the tome category!

In the meantime, what were you told at diagnosis? Were you sent for education? (Did you go? Many people who are referred don’t show up, I’m told.) Are you an obsessive type — or a recovering one?

And in the “for what it’s worth” department, it doesn’t matter to me what method you use to control your diabetes — as long as it’s something that works for you.

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Comments
  1. When I was diagnosed with prediabetes, I was told to eat a healthy diet and exercise, which I was already doing according to the carb-heavy standards of those days. (I wasn’t told to stop drinking high fructose corn syrup beverages, which was a major source of carbs.) After my husband drew an A1c of 10, I got his doctor to send him for diabetes education and I tagged along. Guess who stayed while the other one ducked out for a smoke! By that time, though, I was about to be diagnosed with T2. I wasn’t sent for education, and still haven’t been, but hubby got a series of 10 hours on Medicare at the new Diabetes and Endocrine Center locally, so I went along for that, too. Now we’ve got an A1c competition going - me 6.8 with metformin and using the Plate Method, he 6.5 with 3 different meds and still eating schleck.

    Posted by Deb |
  2. Jan:
    Glad to hear your Dad is doing better and trusts he heals as best as possible.

    On your blog, I am curious about your comments from a point of view:

    30 years ago, no trainers, no dietitians, no excellent websites, ( no web as known today – all military Platform net and Universities.)
    I never received any training but tried to learn and use early finger stick machines.
    Numbers all over place and tried to control diet as best as I could then.
    Obviously not good enough and had stroke in 2007 and spent last 4 years cleaning up mess and working with my Doctor to sort out. In fact, kidneys were starting to fail, weight climbing – couldn’t lose ounce on 1200 calorie diet rigidly enforced and NO Booze.
    Also, no cgms machines and lab tests few and far between. Excuse – nope, I did not do good enough.
    After 28 years , I find by finger stick crap doing 30+ plus tests a day and thru night, my stinking liver was hammering my body every day. Diet – who cares liver was over riding.
    Yes after 2 years and checking vague reports on metformin, I found that metformin really could take a1c from 13.3 to 6.9 and eyes healed, kidney stopped dropping, and diet started working.
    Even more curious was that after 6 months on re timed metformin and diet, my body threw off the external insulin – 26 units of 75/25; starlix booted and actos booted. I was put on 4 units of Humalog Lispro morning , noon and dinner and found my BG pattern moving like waves on placid lake, predictable first time 30 years.

    Am I happy, yes – I am still standing on green side of grass, gods willing, weight finally dropping and my health improving for first time in 30 years.
    Yes, I made mistake but I am equally unimpressed with the misapplied meds, and the lack of proper understanding of type 2 diabetes insulin resistance for which I believe the current treatments are not on target. Lap band, starvation diets, bariatric bypass all pointing out one key fact that those doing that do get their BG back in line in 8 weeks and their own bbody insulin working without any loss of weight first. My hunch is that any diet at least 20 % less in carbs from the min required daily and strictly followed allows the body to get its own insulin back in control and off much of the extra insulin applied as a “cure”.
    These are not cures but simply stopping the rot and running a old hunter gatherers digestion system at more appropriate calorie loads. In addition modern society with its cars, video games, lap top computers and couch potato exercise are acerbating the problem.

    I have nothing to prove here except I am fed up with science out there orbiting the wrong planet and this current monolithic simple view of type 2 insulin resistance as a narrowly defined disease. Its not.
    There are 5 major organs – liver, kidneys, pancreas, thyroid plus a host of hormone signaling – GLP-1; GPP-5 etc that all can foul up and mess up the picnic.

    With type 2 Diabetes – Insulin resistance cases exploding and doubling, I believe we can do better.
    It may yet turnout that what we are really fighting is the lack of optimization and control on an old digestion system optimized for poor, low volume food and stages of starvation having to contend today with the land of plenty since the second world war that provides excess rich food each and every day and instead of scrawny game, rabbits etc we now have farm fed cattle, birds, fish, super rich grains.
    The Pharaohs on the lower Nile should have been so lucky. On our food they could have built the pyramids bigger and higher.
    Have a great day and thank you for writing a great blog.

    Posted by jim snell |
  3. I was diagnosed while I was in the Emergency room after an idiot delivery driver broadsided my motorcycle. I was in the ER waiting for a Dr. when the nurse asked me how I was treating my diabetes. I said “what diabetes” and she said ” I guess that answers THAT question” ;-) I was in the hospital for 4 days dealing with surgeries for the rod in my leg and getting my blood sugar sorted out. I was lucky that the Dr. in the hospital gave me the number for a doctor I could go see when I got out. She turned out to be great. She specialized in dealing with diabetics and together we had my A1C’s down in the 5′ and low 6’s consistently. I was also sent to special classes as soon as I was mobile enough to get there. I learned a lot and have tried to use what fits me. I pretty much eat what I want, but I take my meds and go to the gym 3-4 times a week. So far so good. I’m also pretty sure my diabetes is hereditary since my Mother had it too and she was no where near over weight and I am overweight, but not grossly so. That’s my story and I’m sticking to it!

    Posted by Kustom Jeff Dailey |
  4. When I was first diagnosed, there was no education available. I lived in the middle of nowhere — where my husband was working on a NA reservation. Everything I learned was from going online. And it was all very helpful.

    One source of that learning was from going to a forum. The thing that I found about the “bad feeling” between type 1 and 2 was that many of those with type 1 felt that they had an undeserved problem, and those who had type 2 could have avoided their problem if they lived a better life-style. In other words, those with type 1 were victims of fate, and those with type 2 got what they deserved.

    Certainly I don’t think that most type 1’s think this way, but it’s easy to see why they might. After all, that’s how much of the rest of the general public see it.

    Posted by marciejoy |
  5. I guess that I should consider myself very fortunate. One month after my diagnosis, I was enrolled in a three (?four?) week diabetes education class. And I have been able to email the instructor several times after that class to clear up questions and concerns that I have had.

    Every day I bless my insurance.

    Posted by Cathy R |
  6. well to last comment:

    got em himmel
    bloody hell
    sacreu bleau.

    so glad to see education works!

    fancy that!

    Posted by jim snell |
  7. I was told I have congestive heart failure leaving thr hospital. Follow up visit now I have type two diabetes. All I was told even though I asked was dont eat anything white. I wanted to know how many carbs/day, what should my sugar count bebdo I need any equip. He looked at me and restated no white food.

    Posted by Tamie |

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Type 2 Diabetes
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